The quote marks around the word “cure” in the headline were a sign of the cautious approach of this story. Instead of allowing a sense of hyperbole to permeate, as we saw in other coverage of the same study, we were glad to see many of the appropriate caveats included. The story should have been more specific about the enormous hazards of bone marrow transplants and told readers of their high cost.
The word cure, even when surrounded by quote marks certainly gets one’s attention. Applied to a story about HIV and AIDS, it is an attention-grabber. Despite the arguable hyperbole on the part of the German researchers, the story is interesting because it adds to the suggestion that the CCR5 mutation may represent an approach to eradication of the virus. This story, like others on the topic, spent a fair amount of time explaining the difficulty in broadly applying stem cell transplants to AIDS patients and leukemia patients and talked with the appropriate experts. It serves as a good lesson, in many ways, for reporters covering studies with limited results and stacked odds of long term success.
The story makes no mention of costs. With an estimated cost of $150,000 to 200,000, the cost of a allogenic bone marrow transplant is significant enough to be mentioned.
We’re giving this one a pass here. The story makes quite clear that it is a report on the experience of only one patient and that while the researchers say there are now no signs of HIV infection in this individual, the tests don’t completely rule out the possibility that the virus is lurking somewhere. In particular, the comments of Dr. Gallo to place the apparent benefit in this single patient into context.
The story notes that bone marrow transplants are risky and in fact , “…can kill people.” But it should have told readers that for some types of leukemia, up to 40 percent of patients die have receiving a bone marrow transplant from a donor. What’s more the list of serious complications is harrowing. According to the National Cancer Institute, leukemia patients treated with a bone marrow transplant may have less than a 50-50 chance of successful treatment and even when the treatment works, it is often very painful and may cause serious to kidneys, liver, heart and lungs. So even though this story does tell readers that transplants are risky, it fails to provide numbers that would make clear just how perilous this course of treatment is.
The story does a great job on this point, emphasizing the almost unique circumstances of this case and that the results could not be replicated in most people with HIV. By making good use of the right experts, it is able to show what a long shot this treatment really would be for most patients. “AIDS researchers have rejected the approach on any kind of scale for patients with HIV. A bone marrow transplant is a last-ditch treatment for cancers such as leukemia. It requires destruction of a patient’s own bone marrow — itself a harrowing process — and then a transplant from a donor who has a near-exact blood and immune system type. Months of recovery are needed while the transplant grows and reconstitutes the patient’s immune system.”
The story does not engage in disease-mongering. The story does point out the staggering number of people worldwide (33 million) infected with the AIDS virus. We would have liked to have seen some mention of the number of people who more closely resemble this patient, having both HIV infection and a type of leukemia that might be treated with a bone marrow transplant.
The story’s main expert source was Dr. Robert Gallo of the Institute of Human Virology at the University of Maryland, who helped discover the human immunodeficiency virus that causes AIDS. His comments offered context and appropriate cautions. While the story does not discuss potential conflicts of interest, the researchers declared in their journal article that they had no competing financial interests and the work was supported by non-commercial institutions.
The last sentence in the story reads “Cocktails of strong drugs can suppress the virus, keeping patients healthy and reducing the chance they will infect others, but there is no vaccine.” We would have liked to have seen a little more on this point. The fact is, HIV infection is becoming more and more like a chronic disease because of the success of antiretroviral (ARV) therapies. The death rate from AIDS has plummeted, even in developing countries, over the past two decades. This means that, while a vaccine or another therapy that eliminated the virus post-infection would be a boon for humankind, it is not the only approach worth hailing. We would like to see more ink devoted to innovative attempts to stop the spread of HIV and to broadly apply ARVs in countries that already have a high concentration of infected adults and less attention given to one offs like this study. We would have rated this as satisfactory if the story did not mention the vaccine issue. That expands the criterion into prevention and therefore into public health measures as comparators.
The story makes it clear that it is based on the findings in one patient and that it couldn’t be applied broadly. The story shows that bone marrow transplants are available and points out the unique aspects of the procedure in this single patient; that is, while bone marrow transplants are available, marrow from recipients with the CCR5 mutation is not.
The story apppropriately points out the uniqueness of the report. The patient presented with leukemia and HIV and a donor was available who happened to have te CCR5 mutation.
The story did not rely on a news release.
Systematic, Criteria-Driven
The tale of two “negative” studies. Or, how spin is applied to make research findings look more impressive. A must read. https://johnmandrola.substack.com/p/the-tale-of-two-negative-studies
The @nytimes chose to interview one of the editors of the @AnnalsofIM (publisher of this paper) who "gushed with extraordinary glee: It’s huge! There are very few things that reduce your mortality by 30%."
Turns out coffee is not one of those few things despite all that glee. https://twitter.com/garyschwitzer/status/1533202075928215558
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